More questions than answers......!

[scotslass333]

Hi everyone, my last couple of posts were more about the depression side of things than the RA, am feeling slightly better emotionally and now concentrating on the RA itself. Brief recap : I'm seronegative, no real swelling just severe pain in feet joints, which begun 4 years ago. And fatigue. Been on every medication without much success, including the first biologic, adalimumab. Have now been on SECOND biologic, Abatacept, for 9 weeks. That's 9 weekly injections, and there doesn't seem to be much improvement in pain level, or fatigue level. To be fair, not too many side effects either, except I feel increasingly grotty on day of injection, plus next 2/3. My consultant suggested taking it for 3 months, then if no improvement, stop. But every single time I get to the "is it helping or not?" stage, with any drug, I'm just not sure. How can they ever tell, if there's no inflammatory markers in my blood, and no real swelling either? Does it all come down to whether it's helping my pain, or not? Or should they do another ultrasound scan on feet, where the inflammation DOES show up? They will leave the decision up to me, as usual, and because I'm such an unusual case, I just don't know..... would hate to stop my present injections too soon, if persevering for another few weeks might have produced results. Thing is, I don't see the consultant until August....but I do have an appt with biologics nurse next month. But if there's no way to measure any improvement, all she will say is "Do you feel any better?!" And the short answer is no.

Are there any other seronegatives among you, who might have had a similar dilemma? I really do seem to be 'one of a kind' !!

On the plus side, I've seen a notice in local magazine, that a support group for people with autoimmune diseases has started where I live - meeting at the local health centre once a month - it's tomorrow actually, so hope to go to that.

Thanks for reading this, and for any replies.

[Nettac]

I'm seronegative but have PsA.

I have, however, had high inflammatory markers, and all my bloods are looking better now. I do still have swelling though. Leflunomide just increased to 20mg and just had a steroid shot.

Overall, physically things getting better, but still feel cack.

So I guess not really quite the same as you! I think the thing is, even when things improve in terms of physical symptoms, one can still feel rubbish.

But you're saying there's no swelling, joint damage, but pain? Tricky! How did docs diagnose RA? Based only on pain? Perhaps there's something else going on?

Sorry, not terribly helpful.

[scotslass333 in reply to Nettac]

Oh there's joint damage all right - erosion in a lot of the joints in my feet. And that's how they diagnosed it, through the ulstrasound scans on my feet. The inflammation shows up there. That and something to do with the synovial fluid. I'm no expert, but I trust my rheumatologist. I know I'm probably lucky not to have it in its worst forms, but at the same time, those seem to be the ones which respond quickest to the right drug treatment - once you actually find the right drug! I spent the first couple of years in denial, not sure that I actually had RA......just because there was nothing absolutely definite, but there you go. Apparently, it happens. ! I even got a second opinion. Fun, huh??!

[Nettac in reply to scotslass333]

I have feet issues...bloomin painful isn't it? I'm with you on the depression front too. I was so depressed, and one of the meds actually made this ten times worse.

Maybe the med you have been on for nine weeks will kick in. It's taken a good five months for leflunomide to make a difference, though I have just had a flare. Though, not nearly as bad as before.

Here's hoping for you😄🌺

[Hessie5 in reply to scotslass333]

Scott this is exactly where my inflammation is - leaving me unable to walk properly. Did you have CCP test / score? My ankle, mainly right is inflamed with joint damage - biologics in June as the wretched inflammation is not shifting. It is unusual to have RA in feet I was told.

[Lucy11 in reply to Hessie5]

Hi Hessie,

I'm also curious if scotslass333 tested positive for anti CCP. I was negative for everything else-along with normal inflammatory markers but was put on Abatacept because of high anti CCP and bone erosions on MRI. RA started in my feet& ankles and as such was not diagnosed for years until it showed up in my hands.

It took a little over a year but I'm back to cycling for 4-5 hours in the mountains. Prior to the drugs kicking in I was hobbling myself to the toilet every morning.

I wish you the very best with whatever Biologic they start you with. (By the way, abatacept took closer to 6 or 7 months to really kick in to where I am now 90% better.

[Hessie5 in reply to Lucy11]

Sorry for my late reply Easter rush .... It really is so reassuring to know you are on your bike, so to speak. I long to be able to run again, that is my goal. I use to be one of those people rushing to work, now I am having woman with prams going quicker than me. I am like a tortoise 😬. Today is certainly a better day. I am going to make the most of it amid the risk of a flare (just ate a small bite of home made lemon cake!) yikes! Have a glorious Easter break 🌼

[popsmith1874]

I'm seronegative RA and OA and have struggled for last 3 years, failed on 3 dmards so last July was put on Benepali along side mtx 20mgs and was doing well first couple off months but struggling now as have a lot of bother with hands and fatigue is quite bad, and I have been in bed since last Tuesday as exhausted and a lot off pain in rib cage area so going to Doctors tomorrow to see what's what, and my bloods have always shown fine

[Ouchy]

I can relate to the issue on feet! And I'm sero negative too. And I have quite severe OA. Lots of inflammatory damage in my feet, and the scan showed much inflammation. I had high inflammatory markers, but these were in the months before anyone knew what was causing my symptoms of pain and quite serious weight loss. I was initially referred to the rheumatologist because of pain in both hands, both knees, both hips and both feet. Initial diagnosis was OA by itself. Then the pain moved to different places in my feet and everywhere. Then the scans showed a lot of damage. I was kept waiting a couple of months whilst the rheumy conferred with th docs who had taken the scans. Meanwhile she gave me depomedrol injections and hydroxichoroquine whilst I waited. When sero neg was confirmed I got put on methotrexate injections, three months later I was in hospital and very ill with pyronephritis. Then after a while went on sulphasalazine. This has had a weird effect on my bone marrow, so in the last three days whilst on antibiotics for chest infection and no immune system. Ugh, I stopped them all. Will talk to the rheumy by phone tomorrow. And in much of this such a low and hopeless mood. Didn't recognise the me I knew! I'm very slow at accepting the impact of the diagnosis. My life has changed so much. Every time I think I'm settled, something else goes wrong, so now I have such a fear of the next drug. It is hard isn't it? This site helps a lot. When I read that you also had pain in your ribs I felt a real connection. I do hope things work out better for you. I feel as tho I'm in limbo all the time. Mind you, today's sunshine has been lovely, and I'm now out of bed. But I'm absolute dreading next Winter already. This last one has been painfully dreadful

[Ouchy in reply to Ouchy]

And this is just a PS from the last post. I would absolutely love to be able to sleep without splints, on feet, hands and wrists? Sorry guys. Such a rant! Sorry.

[sylvi]

You do need to take the drug for the 3 months as that is how long it takes to get into your system.xxxx

[scotslass333]

Yes, I suppose I need to give it more time.....although I just don't like these strong drugs! Based soley on the fact that none of them have helped me at all!! There's got to be a reason for that. The more I read about leaky gut syndrome, the Paddison programme, I am coming round to their ideas.....I've cut out wheat for the last couple of weeks, and almost all dairy too, but it's sooooo hard! Am taking turmeric, and fish oil capsules too. But definitely need to work on exercise as well, I know it's important but when you're sore and tired you just want to lie down, right?! And here I am awake since 4am again with all the negative thoughts and fears going round and round in my mind......oh well, at least it gets light nice and early now. Thanks to everyone who replied. Hope you're all asleep! xxx

[nomoreheels]

Hiya Sheena. I'm pleased you seem more buoyant, we worry about you. I'm seropositive not seropositive but I'm similar to you in that I rarely show inflammation in my bloods. Nevertheless I've proved I can have disease activity in my feet which caused all sorts of problems in the 2 years my Rheumy kept telling me as my markers were normal all must be fine & just to rest with my feet up to ease the 'discomfort'. Had it occurred to me sooner I'd have requested an ultrasound, though I'm not sure what reaction I'd have had if it had! No reason you shouldn't though, just remind them you keep answering no to their question.

Enjoy the meeting if you are able to go, it might help having some contact with other RD'ers do you think?

[scotslass333 in reply to nomoreheels]

Thanks nomoreheels, I dunno - in my innocence (ignorance?!) I thought the ultrasound scans were done on everyone, from time to time. Unfortunately I didn't make the meeting, had a lousy night's sleep and knew I just would have to rest in afternoon.....but will hope to get to next one.

[Beaches2]

Hi

I can't help you re the swelling and inflammatory markers.......I had loads of swelling and my esr was in the 90 s. But I too am on abatacept......failed on just dmards and then enbrel. Abatacept took a good few months.....around 3 or 4 I think, .....to really get going. Apart from blood tests etc, it became obvious it was working, pain disappeared and I was physically active again.....I'm pretty sure you will know when it's working. I know it's hard to keep going when you don't know if it's doing anything...... I had 6 months on enbrel " waiting " for it to work, I was gutted that it didn't, but don't give up on abatacept too soon, it's been great for me, and hopefully will help you too.

[scotslass333 in reply to Beaches2]

Thanks Beaches 2, that's really encouraging, I'll persevere with it. The real trouble is that the worst pain in my feet is on the top of both feet and it's caused by the erosion of these joints (a surgeon has already said he will fuse a couple to see if that helps my pain....), So I can't see that any drug is going to reverse that damage, is it? It's all so confusing......anyway, am off to do my weekly injection 💉! Thanks again.

[Beaches2 in reply to scotslass333]

No, sadly the drugs can't take away damage already done. That's disappointing for you, it's shocking how quickly damage can occur when things are not under control. Really hope abatacept kicks in and at least stops any further damage and makes you feel a bit better.